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- Ethical, Legal and Social Implications (ELSI) Research Program6
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genetic Architecture of Complex Traits1
- Genome Technology Program5
- Human Genome Reference Program (HGRP)2
- Impact of Genomic Variation on Function (IGVF) Consortium3
- Encyclopedia of DNA Elements (ENCODE) Project1
- Molecular Phenotypes of Null Alleles in Cells (MorPhiC)1
- Genomic Innovator Awards2
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)3
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
- Developmental Genotype-Tissue Expression (dGTEx)1
- Multi-Omics for Health and Disease (Multi-Omics)1
Policy Issues
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… is reviewed and updated monthly. Searchable topics in the database include employment and insurance … Building a Sound Legal Foundation for Translating Genomics into Clinical Application” (grant #: R01HG008605 ; … bills introduced during U.S. state legislative sessions. … Policy Issues …
Talking Glossary
La hibridación fluorescente in situ (FISH) es una técnica de laboratorio que se usa para detectar y localizar una secuencia de ADN específica en un cromosoma.
… Hibridación fluorescente in situ (FISH) … La hibridación fluorescente in situ (FISH) es una técnica de laboratorio que se usa para … de ADN específica en un cromosoma. … Fluorescence in situ hybridization (abbreviated FISH) is a laboratory …
The Genomics Landscape
In the November 2024 issue of The Genomics Landscape, NHGRI Director Eric Green spotlights the History of Genomics Program, which has long worked to make various materials related to the history of genomics accessible to the public.
… at the 3rd International Conference for Newborn Sequencing in New York City; followed by a symposium in Toronto … (CCDDs), which affect brain development and can lead to issues associated with a particular variant in a single … Human Genome Project “mediocre science, terrible science policy.” He successfully recruited 55 others — mostly …
Staff
Cristina Kapustij was the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute until June 2024.
… Cristina Kapustij, M.S., is chief of the Policy and Program Analysis Branch at the National Human … needs for the field, and develop policy positions on issues arising from the translation of genomic research discoveries to uses within the public domain. In addition to advising Institute leadership on a broad range …
About NHGRI
The Genomic Data Science Working Group facilitates engagement of the National Advisory Council for Human Genome Research on genomics and data science issues.
… Advisory Council for Human Genome Research on complex issues at the interface between genomics and data science. … The NHGRI Genomic Data Science Working Group was created in 2017 as a subcommittee of the National Advisory Council … challenges (from data management to data usage, including policy-related elements) as they relate to all areas of …
Policy Issues
NHGRI wants to ensure that all populations benefit from the advances of genomics research.
… is also necessary to understand ethical, legal and social issues including utilization of genomic information, access … genomics research, and have the opportunity to participate in various ways, such as becoming research scientists, research participants and policy makers. It is important for everyone to be informed …
Staff
Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome Research Institute (NHGRI)
… Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office … and grantee partners on data sharing and privacy policy issues. For the last three years, she has advised the NHGRI … matters. Within NHGRI, she holds a joint appointment in the Policy and Program Analysis Branch (PPAB), where she …
Policy Issues
Scientific institutions are developing recommendations to support the responsible use of human gene-editing research.
… In the United States and around the world, scientific … different groups including patients, community leaders and policy makers. NHGRI uses the term "genome editing" to … implications, international perspectives, governance, and issues related to equity and access to technology. On …
Research Funding
The Division of Genomics and Society focuses on the societal issues that need to be studied and addressed as genomics advances.
… Genomics and Society is responsible for exploring societal issues related to genomics, incorporating and extending the … research program and integrating NHGRI-wide activities in these areas. … The Division of Genomics and Society is one … will also collaborate closely with the Division of Policy, Communications, and Education to ensure that the …
The Genomics Landscape
In the April 2024 issue of The Genomics Landscape, NHGRI Director Eric Green details how the Office of Genomic Data Science (OGDS) is becoming the epicenter for genomic data science at the institute, with numerous collaborations, projects and activities.
… late last month. This budget provides $48.6 billion in base funding across NIH, which is an increase of … credits” that allow researchers to conduct cloud-based genomics research on the AnVIL platform. In partnership with … input about computational genomics and data science issues. Recently, members of the working group published a …